Dedee

It was so wonderful to get to meet you. You are as warm and caring in person as you are on line..... Dedee

Yes we are in week two of the three week program. We brought two of our children. Our 15 year old who still has some residual eating issues and our 7 year old who has been in acute exacerbation since last november. Let me start by saying the program is wonderful. My daughter has made huge strides already. Most importantly, we have learned so much on how to help her and she has learned tools on how to be strong and how to help herself. Now my 15 year old is a little different. He wasn't too excited about going in the first place. This had been discussed and we were anticipating some resistance. The team is awesome and couldn't have been better with him. However, after the first week, my son refused to return. He has tons of denial regarding his condition and dosen't believe his limited eating selections is a problem. He has been evaluated by both Dr. Murphy and Dr. Storch who believe it is a problem. In addition he has a therapist at home who thinks it's a problem also. But....I can't physically drag him there so we have to re-group. Like I said though, everyone here is great. They are going to meet with the family (actually that is just me right now. Hubby had to go back to work), to come up with a workable plan for returning home instead of just leaving us to our own devices. That is very helpful for me. So, I would recommend the program if you can possibly manage it. I think it is easier for the younger children because they are easier to "re-program" if you will. Although I am told they have good sucess with teens as well. I certainly see lots of teens in the waiting room. It has been a life saver for us. Between the IVIG a month ago and this program, my daughter looks like a different person. It's a beautiful thing to see. I would be glad to answer any questions for you if you want to PM me. Also, if you need help finding some place to stay, I can give you some pointers. We have managed to throw in a few sight seeing days as well. I think I am actually enjoying myself. :-) Shhh....

You are doing just exactly what you need to do! The CBT program will give him exactly what he needs to help with those residual issues. We are currently in week 2 of the program and the people here are awesome. I would recommend it for any child at a functional level for understanding their illness. My daughter may not have been able to do it 6 months ago before antibiotics because she was so uncooperative with stranger anxiety, but she is in a good place for it now. She is responding well. Best wishes.

Most consider 1.5-2.0/kg to be high dose PANDAS protocol. This is given over two days. We were not able to get our insurance to pay. We are still under appeal but we decided to go ahead and pay out of pocket because our daughter was so severe. She weighs nearly 60 lbs and our total was about 7K for the entire process (We did the 2grams/kg). Totally worth it from our perspective. Good luck with the insurance. Dedee

Yep, I agree with the others. I say have him tested. Could be a couple different things. He could have a current strep infection and not be showing physical symptoms, or another infection sparked the PANDAS. My daughter only had strep once, and she was triggered by a flu mist. After some testing we found out she has myco p. My other PANDAS son is strictly strep triggered. I would get on this early if I were you. Take my word for it, having three with PANDAS is no fun. Get it under control as quick as you can. Best of Luck. Dedee

If he had a positive IgG and IgM titers for Myco P, then he really should be on a much longer dose of antibiotics. Myco p can hide out and depending on which doctor you go to (or which article you read), some will say it takes between nine months to two years to clear. Generally one month minimum for myco p with corresponding neuropsychiatric symptoms. My daughter took one month on Zith and is now on Biaxin. The Zith only helped minimally. The Biaxin has made the biggest difference. Also, keep in mind that in some cases myco p can be associated with other infections. I haven't had my daughter tested for Lyme or other co-infections, but her Doctor says that many times when you see myco p. you will also see other infections. Is there an ER in your area that runs a "Fast Track"? Some emergency rooms run a fast track that is similiar to a walk in clinic and you are billed in the same fashion. It is usually staffed by a nurse practioner and is for non-emergent situations such as what you are dealing with when no other health care providers are available. You can simply call the hospital and ask if this is available. It may be able to get you antibiotics a little quicker. Just a thought. Best of luck with your son. Dedee

My daughter is mostly PITAND. She was positive for Myco P. Although her strep titers were slightly elevated in the beginning also. We re-tested her strep titers the day we started IVIG and found out on Friday they had returned to normal but still treating the Myco P. I am assuming there is still underlying infection since she was so high on her Myco P titers. She has been on antibiotics for two months, but my understanding is it can take up to 9months or more to clear systemic myco p. When I spoke to a lyme doctor about testing for lyme he said she was already on what he would treat her with anyway so to proceed with the IVIG. She seems to be recovering well. No more headaches. Behavior seems to be about the same as pre-IVIG. Had a couple of good days and now seems pretty much status quo. So we wait....

My daughter's flare started after a flu mist. The worst vaccines are the anti-viral's (such as the flu or chicken pox vaccine), although any can be the culprit. We have decided no more anti-virals for my kids for sure.

I don't mean to sound like a broken record with the others but...... I have three children also and we drive 13 hours to our PANDAS specialist. This after too much wasted time, energy, money, and emotions thinking I would be able to work with someone in this area. Let me tell you 13 hrs in a car with my PANDAS daughter and my two boys is no cake walk. But it has gotten us our end result, which is our diagnosis, antibiotics, and recommendation for IVIG. After that we were able to find someone local who deals mostly with autism(but understands PANDAS) and does IVIG in her office. She is working in collaboration with our specialist. I wish you the best of luck. You are fortunate that you live fairly close to a very good PANDAS specialist. Dedee

Some of you may have read that the first day was really tough. Well, the second day was a repeat of the first. Not really sure why but she got really agitated and compative during the infusion and her Blood Pressure went up. Ended up sedating her both days. I am glad we did it in the office. I am afraid if it was in the infusion center they may have stopped it and sent her home (since they don't know her history of rages). In the office they stopped the infusion for a bit till the rage subsided and the pressure came down. Once she was calm we finished with no problem. Happened about the same time both days. She gave some IV benadryl and some more versed and she slept for the next couple hours. She has done fairly well since infusion. She has ran a low grade temp, had couple days of nausea, and yesterday she had a horrible headache. The only thing that really concerned me was the headache. It got pretty intense for a while and she couldn't stand any noise or light. Finally with some motrin and phenergan she slept for a few hours and it was gone when she woke up. She had a mild headache last night but cleared with motrin. She hasn't had any complaints yet today. As far as behavior, I don't know that I could say that the changes would be due to IVIG or the steriods she got prior to treatment. There is definately a difference in behavior, but she always had improvement before when she got steriods, so I'm not sure if it would be the IVIG or the steriods they gave her prior to the infusion. I am really worried about the regression that some see initially with IVIG. For those who have experienced that, when did you first notice it? We leave next week to go to Florida for the three week intensive CBT program. I am praying we don't start seeing it then. So now we just wait I guess...... Dedee

She ate a huge lunch before we left but we probably should have taken more snacks. We are going to try that today. I do believe that Versed withdrawal contributes like you said. Anytime she is really tired she rages easily. There just isn't any other way to get an IV in her. It takes four people to hold her down and then the nurse to start the IV. It is so traumatic and breaks my heart. Some children get used to going to the doctor and having medical procedures. But for her, it's traumatic every time. I try to give her control over situations, but her idea of control is to run out of the room....lol. I just pray she grows out of it. There is still time...she is only seven.

We are doing our IVIG at the Doctor's office. She does IVIG for PANDAS and Autism patients and says she is very cautious when doing HD IVIG. We had to sedate my daughter to get the IV in. Gave her IM Versed. She always goes nuts anytime she has to get blood drawn or any sort of medical procedure. Versed works well for her. The IV went well and she got her pre meds and hydration. About 2 hours into the IVIG she started crying saying she wanted to go home and see her brother. We tried to calm her, offering to call her brother, but she just kept getting agitated. They let us get her up and walk around a little since she seemed so restless. Tried to watch a movie, play a video game but she just got worse until she started trying to pull out the IV and was screaming and fighting to go home. I ended up holding her down in my lap while she was screaming and fighting. After about 20 minutes they stopped the IVIG because her blood pressure had gone up so high and they gave her benadryl and more sedation. She calmed down after about five minutes and fell to sleep. After a few minutes of sleeping her blood pressure started to come back down so they started the IVIG back very slowly and increased it over time till we were finally able to complete it. She slept the rest of the infusion. It was very scary. She was horribly irritable on the way home and we took her straight to bed. This morning she seems the same as pre-IVIG. We leave in a few hours for final dose. I am extremely anxious. All I can think about is that extreme rare chance of stroke. Has anyone had this happen during infusion? Is she getting to much? She ended up getting it over six hours. She is getting 2grams/kg over two days, so she gets 1gram/kg per day X 2 days. I understand this to be the PANDAS high dose protocol. They are doing 250cc of hydration before and after infusion and also benadryl and steriods before each infusion. She was starving after we were finished and ate more than I have ever seen her eat before she went to bed. I gave her motrin last night and this morning. Any thoughts or suggestions? I am worried and confused as to what this could mean. Very concerned about today's infusion. Dedee

Our last appeal, through the national appeals committee, was denied. Our letter was from a pediatrician of all things who said there was no evidence of any acute medical disorder in our child. I can't take any more waiting so we have decided to go forward with IVIG through our doctor who does it in her office. She has done lots of IVIG, some for PANDAS, some for autism and others for other autoimmune disorders. She is very comfortable with the procedure. It will be completely out of pocket but we are still looking at another appeal since sher may have to have this again in the future. I just can't put my daughter or our family through any more waiting. We are going to do the HD IVIG at 2g/kg over two days. My daughter isn't very compliant so I am a little worried about getting her to drink and do the other things she is supposed to do. The doctor said she will do hydration, benadryl, solu-medrol and some anti-oxidants prior to the infusion and then more hydration after. I just hope my daughter will do her part on the drinking and so forth. So please just pray for us on Monday and Tuesday. I am very nervous..... Dedee

Wow, isn't it crazy that they would pay for PEX and not IVIG? We have decided to move ahead with the IVIG and pay out of pocket. We are doing it in a Doctor's office. They do IVIG frequently in the office. We are still going to work on another appeal but I can't wait any longer. My daughter needs help now. She will most likely need this again at some point in the future, so we hope we can get it approved before then. I am still waiting to hear confirmation, but they gave me a tentative of Monday as a start day. We are nervous but ready. Keeping my fingers crossed......

My 15 y.o. PANDAS son got tonsils and adnoids out at age 11. Best thing we ever did. He was constantly getting strep that year and his PANDAS was at its worst. He stayed on full strength antibiotics (augmentin) for several weeks after and then went to a low dose and has been there since. He has never had another strep infection and has done very well since. He still has occasional mild flares when he gets a cold or when one of the other kids are sick but over all, compared to where he was at age 11, he is doing well. I do think it is important for them to be on a full strength antibiotic for a while after surgery. It only makes sense that it would release bacteria into their system. Also, because he is a PANDAS child, his PANDAS doctor says it is important for him to maintain a low dose antibiotic until around age 17. He only takes amoxicillin 250mg twice daily, which is pretty mild compared to what some PANDAS kids take. All kids react differently. I hope you have a positive experience. Dedee

Lynn, That is such great news. We just switched from Zith to Biaxin. My daughter is positive for Myco P. She took Zith for a month with no real progress. How much is your son taking? My daughter is only seven and is taking 250mg daily. I wondered if this was enough but I am having trouble getting her to take it because it has such a bad after taste. She has only been on it for 5 days. I hope we get some positive results also. Keep us updated. Dedee

Eileen, I have all the info at my office. I will PM you tomorrow. Dedee

Yes our insurance will pay for PEX for PANDAS. Problem is that the insurance letter is refusing to acknowledge that she has any medical disorder which disqualifies her for any treatment at all. They didn't accept a PANDAS diagnosis evidently (according to the letter today)because she wasn't positive for strep immediately following the exacerbation only for Myco P. But then went on to say there wasn't a direct coorelation of Myco P to her behavior. It is the most frustrating situation. They only acknowledge that she has behavior disorder. I will definately check on getting the IG through prescription plan though. That is a good idea. Thanks for the help. Dedee

We go July 9th and leave the 31st. We will just miss you. The kids school starts back the first week of August. We rented a condo about 10 minutes away from the hospital. We have it for all of July. I'm thinking about going down a few days early with my sisters for a little R&R before all the chaos starts. Not sure if that is going to work or not though. My kids get really crazy when they are away from me. Still trying to figure that one out. Probably just a dream......

So once again our insurance denied our appeal for IVIG. What was so heartbreaking was to read their letter of explanation. Evidently ignorance abounds everywhere. My daughter is positive for mycoplasma pneumonia both IgG and IgM and of course all of that documentation was sent to insurance. Even still, the letter states "The presence of antibodies is not indicative of her having any acute medical condition related to the Mycoplasma pneumonia. In fact, and with the exception of the behavioral changes, there is no evidence in this individual that she had any acute medical disorder." So evidently, you can wake up one morning a completely different person with debilitating OCD and seperation anxiety but it isn't considered an "acute medical disorder." I guess if your kidneys shut down over night that might count as an acute medical condition, but hey this is just a child's brain we are talking about. I can hardly breath I am so upset. Of course they go on to say that she doesn't have PANDAS because it didn't follow a documented strep infection so rule that out. So basically, there is nothing physically wrong with her, she is just crazy. I could scream......... I am lost as to what to do now. We could appeal again, but with them refusing to acknowledge any physical issue, I can't see any difference in outcome. I think one issue for us is that she doesn't have any antibody deficiency. So I guess we are looking at out of pocket. We have seen a nurse practicioner in the past who treats PANDAS patients and does IVIG in her office. We had to quit seeing her because she is cash only and we needed to use insurance as much as possible. I'm thinking of getting another appointment and check out the possibility of doing IVIG through her. It may be the best route if we have to do the out of pocket route. Those of you who have done it this way, do you have any suggestions? I just can't give up on helping my daughter. I have to at least try to find a way to make this possible. I am so devestated....

Same for us......We are headed to Florida for the three week program. Going down in July. We are actually taking two of our PANDAS kids although we are mainly worried about our daughter who is in flare at the present. Dr. Storch / Dr. Murphy have a wonderful program with great documented outcomes. I am taking off most of July and my husband is staying home to work. I'm not thinking it will be much of a vacation with two PANDAS kids in tow and no spouse for support, but praying for some sort of help dealing with these issues.

I would say he was about 70% recovered immediately after. The tics went away completely. There was still some residual OCD / anxiety that resolved over a few months. He stayed on antibiotics though. The surgeon said his tonsils were huge with big pits in them that probably had tons of bacteria in them. In regards to the titers, I wouldn't worry about that yet. We didn't have titers done prior to the surgery. We did them 5 months after when we were going to see a PANDAS specialist so we could convince my pediatrician that he needed to stay on antibiotics. His AntiDnase B was 2,700. My pediatrician couldnt believe it. That really made her a believer. His symptoms were much better though. I think when they are really sick like that and strep is the trigger, it takes a while for them to come down. I shudder to think what they had been. I am convinced that having his tonsils out was a good thing for him. I just don't think we could have ever cleared them of the strep. For kids who have strep hiding in other places, it wouldn't make much sense. I think you will see steady progressive improvement. I would stick with a full strength antibiotic for a while. Good luck to your son. Dedee

When my oldest son kept getting strep and we couldn't get rid of it, I finally just had his tonsils taken out. I know that is sort of contraversial, but he was getting worse with each infection and I was ready for something drastic. He hasnt had strep since. He is still on daily antibiotics and he will occasionally react when one of the other kids is really sick, but he hasn't had a major flare in four years. It works for some, but I know there are others that still have problems. Just my experience. Dedee

I thought that I remembered reading something about Cipro XR for Mycoplasma. Since my daughter will only take something once a day (if I'm lucky), the XR once daily piece of that sounded really good. I know they don't like to give it for more than two weeks because of the potential side effects. My daughter doesn't seem to be doing well on the zith. A little improvement in some areas, worse in others. Since it would be impossible to get her to take anyting more than once a day, I am trying to figure out what the other options are.....

We had been using zithromax cream because my daughter was refusing to take anything by mouth. After about two weeks a miracle happened. I worked with her for about three days with candy and bribed her with a video game until I taught her to swallow very small candy and pills. So for several weeks now she has taken her zith by mouth (cut in half a few times). Mind you it takes about 20 minutes to get it down. Sometimes she coughs it up and we have to start all over, it's a major ordeal every night. But..... she has done it consistantly every night. This is huge for her. I have tried repeatdly to get fish oil or anything else in but NO Way...she is only going for one thing. No more compromise. So, I am taking what I can get for now. So, my question is.....after nearly a month of oral zith with no improvement, I was thinking of switching to a different antibiotic. She is positive for Mycoplasma both IgG and IgM. Her Zith dose was 500mg for one week and then she started having diarrhea so we dropped it to 250mg. She is only 7 years and weighs about 60lbs. Has anyone had success with anthing else? We are still waiting on our appeal for IVIG from insurance. They requested peer review articles and we sent nine articles over the week-end so we hope to hear something soon. Mean while, things are as bad as they have ever been. Rages are horrible, seperation anxiety, constant crying....our home is in turmoil. I am open to ideas.........